Peter Panning

Topical Steroid Withdrawal is a large facet of my life, an overarching theme that overshadows the rest.

Over the summer, I tried running from it. I didn’t want to talk about it, think about it, argue about it, post about it. I just wanted to be. As if it were behind me.

Then, boom, a freaking flare.

Whether you are one year or seven years, a flare is a flare, and the mental toll it takes is sometimes way more painful than the picture it paints on the outside. And I’m learning that this trend, this mental load we all bear, is universal in this life.

This week I learned that Stephen Boss, more famously known as Twitch, died by suicide. I sat in my chair, stunned. No words. It hit me harder than all the other untimely, famous suicides this year. Even Jason David Frank, well known for his role in Power Rangers, was a devastating loss. But Twitch… this one broke my heart.

He was such a light. He had a beautiful wife, and they made the cutest videos together on social media. His family was vibrant. He was well accomplished and influential. His energy was infectious, always a smile on is face. He had financial stability, a gorgeous home, a way to possess any materialistic item he wanted.

News flash. That is not enough to beat mental struggles.

People tend to say, “Oh, but they had so much to live for.” You’re right, he left some incredible things behind, including a legacy I know I’ll never forget. But all of those things — the fame, the money, the status, the perfect family — are no match for a decaying mind.

With men especially, it is so important for us to show up and be there for vulnerable moments. To be open and willing to share. Men carry such a hefty weight from society to be “masculine”, to have it all together, “boys don’t cry”, you name it. It’s as if to feel anything but positivity is a “you” issue. It’s unbearably sad to see that, in rounding out 2022, we still can’t wash these toxic imprints away.

Positive thinking does not work all of the time. In fact, it’s deadly. We can not go around Peter Panning people anymore, believing that just “think happy thoughts” is going to cure someone of the anguish they are experiencing. The mind is a POWERFUL thing and can eat itself alive if we, as humans, aren’t allowed to express a full range of emotions. Even more, to process a full range of emotions.

So, I think about our community, about our day-in, day-out suffering. Please know, you are doing something incredibly brave and hard. This is an unfathomable time in your life and it’s more than okay to not feel good, or positive, or optimistic all of the time. And when you find yourself in those low moments, reach out. Not just to a friend or family member, but to a trained professional who can serve as a guide through all of the dark moments. Not everyone around us is equipped to aid us through — hell, we don’t even know how to help ourselves most days. I don’t expect my loved ones too, either.

I wish there was an easy way to take all of this loss away, to wipe the slate clean for a more compassionate understanding that we all handle situations differently inside our body and mind, and that everyone is valid in what they are feeling. Men, women, children, everyone deserves a safe space to grieve, to feel, to grow through their emotions.

If you are feeling low, or having suicidal ideations, know you belong here. No one wants to see you suffer, and no one wants to find you gone from this world. Help is here. This life is here for you to live out, and when it doesn’t feel that way, there is a rope to hold onto, one that will pull you out of that mire so you can see just how worthy this world is to have you in it.

We are all meant to be here. Do what you need to do in order to remember that. I started Dupixent to remind myself of it. It’s a struggle I still face some days. The exhaustion of advocacy, the slow-paced wins, the opportunities I miss out on, the inevitable valleys that come with a chronic, misunderstood condition. But, life is beautiful and I am determined to make it count. To not Peter Pan my way out of embracing every emotion and working through it.

I hope you’ll hold my hand and do the same.

2 responses to “Peter Panning”

  1. Brianna, what beautiful and heart felt words. I’m so sorry you experienced another flare up.It almost seems much harder when it returns and you’ve been healed for a while.

    You’ve such a lovely and inspiring way with words which touches the heart of the way people feel. No one can put into words how anyone feels with this dreadful condition unless they’ve been through it.

    The same happened to me after I caught Covid last November and sadly the last year’s been horrendous. It’s harder because I’m not sure whether it’s TSW or Covid related. All the symptoms seemed to look like nasty TSW so I’m clinging on hoping it’ll eventually abate but it’s so hard not to go back to the steroids when I’m not 100% sure of the cause. Of course dermatologists all tell me steroids are the way to go!!!

    It sounds as though Dupixent is really helping you. I tried it and my body didn’t like it so I’m hoping and praying that light and healing will be round the corner soon as dermatologists have washed their hands of me because I’m refusing steroids and Dupixent caused side effects.

    I hope you and your family have a truly lovely and peaceful Christmas.

    Take care

    Elisabeth xxx🎄🎄

    1. This was so touching to read. Thank you for the love. And I am sorry to hear that Dupixent wasn’t able to provide you any relief. I honestly wonder where I would be at the moment without it. I am trying to not take it for granted, especially when trying to create a second documentary now. If I can use this time of respite to make something that could help the community, I want to do it xx So much love back to you Elisabeth.

Leave a Reply

%d bloggers like this: